Thursday, June 5, 2014

A few things collided in my mind this morning.First I read this exquisite essay by Michael Bérubé about his son Jamie’s search for work. Jamie, 22, has Down syndrome. He’s also a “bright, gregarious, effervescent young man with an amazing cataloguing memory and an insatiable intellectual curiosity about the world—its people, its creatures, its nations, its languages…” writes his dad. Bérubé peppers his piece with vivid images and anecdotes about Jamie that bring him to life.At age 13, Jamie declared his career goal: to be a marine biologist.But by the end of Grade 8 he’d scaled back his expectations: first to “marine biologist helper,” then, when asked at an IEP meeting what he'd do for a living, he answered dejectedly: “Groceries, I guess.” “I’m not sure what I would have felt that day if I had known that he would have to settle for less than that,” Bérubé, a literature professor at Penn State, writes.Despite a raft of part-time volunteer jobs and minimum-wage positions in a mailroom and doing recycling during his teen years, Jamie's post high school assessment on work suitability “filled us with despair. Factory work, nope; food service, nope (not fast enough); hotel maid service, nope; machine and auto repair, nope.” Trials to see if Jamie can do conference set up or stack shelves in a supermarket don’t pan out.After two months sitting in the basement watching Youtube, he begins working two, and then three, days a week at the local sheltered workshop. Jamie sets up vials used to collect hazardous materials and makes $8 to $10 a week. Yes, you read that correctly.Go back to the third paragraph and read Bérubé’s descriptions of a kid who bubbled over with his impressive knowledge and love of sea animals. Then tell me that the thought of him sitting at a table organizing inert containers that have nothing to do with him isn’t shattering. A horrible waste.“It is not the life we – and he – wanted to imagine for him,” Bérubé writes.But it’s common.You’ll recall that disabled workers are the only group that has no wage floor: they don’t have to be paid minimum wage. A person doing manual work in a sheltered workshop might make $1.45 an hour, or they might make a lot less. Meanwhile, as Curtis Decker, executive director for the National Disability Rights Network, notes in this story, workshop executives, who are paid from $250,000 to $400,000 a year, vehemently resist raising worker pay to one-third that of minimum wage.Private horror stories include the rendering plant in Iowa that paid men with intellectual disabilities $65 a month to get up at 3 a.m. every day and gut turkeys, some for over 30 years.When Bérubé’s story popped up on my Twitter this morning, it held a certain poignancy and ache for me.I’d just received information about a day program that my son could attend when he leaves school in a year at age 21. It’s a program that would cost about $1,000 a month (is that the equivalent of what parents pay for daycare of small children?)There’s nothing inherently wrong with the program.But I can't help thinking of all of the young adults who will go there, students like Jamie, who grew up with their own unique visions of what one day they’d “be.” And how for all of these youth, the day program or the sheltered workshop or sitting at home watching TV, whatever the endpoint, will be a complete disconnect from what they imagined.My son’s dream was to be a zookeeper. He’s always had a special fondness for unusual creatures like the tapir, which looks like a dense pig with a trunk. He recently created his own sign to depict the unusually long snout the tapir uses to pluck fruit from trees. If it wasn't for my son, I never would have known that the tapir is born with spots or stripes that later fade; has been on the earth for millions of years; and is part of the family of horses, rhinoceroses and zebras.We haven't brought up the field of zookeeping recently. I'm not sure how I would explain that my son's passions will have nothing to do with his future work. It seems cruel.Yesterday I read about “the self-enhancement bias,” our evolutionary tendency to inflate our abilities, so that each one of us presumes we are so much more capable and talented than the average person: “Your wildly inaccurate self-evaluations get you through rough times and help motivate you when times are good,” says David McRaney, author of You Are Now Less Dumb. “Research shows that people who are brutally honest with themselves are not as happy day to day as people with unrealistic assumptions about their abilities.”It made me think of Jamie, and how he'd been forced to progressively dismantle his dream of working with sea animals, how youth with disabilities aren't allowed to have the “delusions of grandeur” that the self-enhancement research suggests is wired into us to keep us hopeful, emotionally afloat and moving forward. How had Jamie's passion to study or care for other-worldly and diverse sea life been transformed into the more “realistic” counting and packaging of meaningless vials?Despite parents who were creative and bold and resourceful, it was the only option left to him. Yesterday, this piece about how companies keen on designing diversity programs overlook people with disabilities struck me as sad and darkly humorous. According to a British consultant who helps companies recruit and train staff with disabilities, HR folks often dismiss her, saying: “Oh, we're not doing disability, we're doing women… and black people at the moment.”This morning, Canadian researchers announced in the American Journal of Human Genetics that they had “solved” 146 rare disorders, including identifying 67 new genes that haven’t been associated with rare diseases before. “When we launched this project, we predicted we might explain, or solve, 50 disorders; we’ve almost tripled that goal,” said Dr. Kym Boycott, lead investigator and clinician scientist at the Children’s Hospital of Eastern Ontario.It sounds exciting, doesn’t it? But the word “solve” is misleading. Identifying the underlying genetic basis of these rare disorders doesn't “solve” the disorders for anyone living with them. And the truth is that for most of these conditions there never will be treatments: there isn't money in developing therapies for conditions where a tiny population benefits (please see The politics of funding).I learned this 18 years ago when I started an international association for families of children with my son’s rare genetic condition. At the time, the two genes that are deleted in this syndrome had been identified. I remember how excited I was to interview the scientists and write stories in our newsletter. In fact, there was even mainstream research interest in one of the genes because it’s a tumor-suppressor; understanding it was thought to be a window into understanding certain types of cancer.Eighteen years later there are no tailored genetic treatments for this syndrome. And there never will be.The Canadian researchers say a benefit of their gene discoveries is to “offer informed reproductive counselling.” I guess that means that at some point we’ll be able to diagnose these conditions prenatally and women can choose whether to abort or not.But other than the “gee-whiz, isn’t that cool that we know which genes are responsible for this disorder?” these findings will do nothing practical and meaningful for the children and families affected. Eighteen years ago the news would have sparked false hope in me. Now I know better.Instead of throwing money at studies looking at the genetic basis of rare conditions—research that will never translate into workable therapies—I’d like to see money invested in improving the lives of kids and adults who are here now, people like Jamie, who once dreamed of being a marine biologist. To me, finding a way to prevent the passions of people like Jamie from being crushed is a more urgent and noble research goal. I bet you it's also more challenging and less glamorous.

7
comments:

Oh, Louise. This is profound -- I don't think I've ever read anything quite like it. I have thought these things -- particularly the parts about the money spent on genes, etc. -- but never put these thoughts into any sense of order or coherence like you've done so perfectly here. I hope this gets a wide readership -- please submit it! I will share on Facebook --

I wondered the other day, just what is the goal that society is striving for with prenatal genetics and termination? Is it just about intelligence? I think not, because once those with cognitive disabilities are eliminated, maybe there'll be a way to identify only superior intelligence because surely that is better, right? And what about genes that relate to risk of mental health conditions or medical conditions? Who wants a baby at risk of schizophrenia or breast cancer? How can it be fair to bring such a child into the world?

I don't think it ever ends. Once you start choosing and judging it never ends.

I heard this Scottish comedienne's talk the other day about prenatal testing. It is excellent (and funny too). She makes an insightful point when she considers that her son might have Down syndrome. She asks if having Down syndrome means you are a 'bad person.' It made me think, wouldn't it be something if prenatal testing could predict if the unborn would be a 'good person" or would contribute in a way that would make the world a better, kinder and more compassionate place either directly or indirectly by inspiring others. And then I realized that we do have these tests and the conditions they identify are often those in which the fetus is deemed better not to be born.

I heard an equally depressing story on NPR yesterday about how our juvenile justice system treats children, many of whom have psychological disorders, stripping them of their vibrant youth and replacing it with endless boredom, where they slouch over in chairs with the discovery channel making empty noise in the background of their day room. It is crushing to contemplate. Both these stories are.

But there are also equally delightful stories about matching the passions of a wide variety of youth and adults with disabilities with work and meaningful employment. It is possible! See, for example, what McKnight has done in the states (and up here in Canada) around social & community capital (asset-based community development I think its called)! He has some great stories. But so much of it comes from connections and building community capacity ... which our kids are doing just by being in school! Their peers are the co-workers and employers of the future ... no? Things are changing, slowly, but still... changing. Get your friends and neighbours and family to note to the manager at any store that employs a person with a disability (and you can see that they are treated respectfully). Don't let them know that you have a vested interest ... just ask for the manager and say that you noticed! Hey! I see that you employ people with a range of abilities. I like to see that. I'm going to make sure to come back here! If we (and all our neighbours and friends) did that, what kind of a difference do you think that would make?

It's worth noting that there are plenty of non-disabled kids who do not fulfill their dreams of becoming marine biologists - can't hack it, lose interest, get the degree but can't get a job in the field of their choice, etc - and it is NOT, in and of itself, regarded as a tragedy. It's similarly non-tragic if a kid with a disability, like Jamie, doesn't land his dream job either.

It is also worth noting that Jamie lives in State College, PA - a smallish college town in the middle of nowhere. That likely impacts his job prospects too. It isn't right, it isn't fair, it just is (and applies to the non-disabled kids in his town too).

There's clearly a need to assist kids like Jamie - smart, curious, friendly, hard-working and in need of a bit of support - to find a job he enjoys and in which he can meaningfully contribute. But it's also not a tragedy if all Jamie finds is a boring, just over minimum wage job that pays the the bills -- as many a non-disabled kid is forced to do too.

On a happier note, and speaking from personal experience, in a city like Toronto (my hometown) people with disabilities have plenty of options -- my dad (who raised me as a single parent) is blind and spent most of his career working for the city as a mid-level manager and my niece (who has DS, like Jamie) landed a job she loves (and has held for years!) via her adult transitions co-op program at Costco and many of her friends did too.

Thank you for this well-written article. Sad, but true. There are some good organizations out there, but it is hard to find them. My sister worked for over 20 years for a wonderful organization in Tacoma, WA called L'Arche Farm and Garden. You can find them on the web, or read about them on my blog. I think they have facilities in other places.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.